Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014

Abstract

ObjectivesTo describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example, whether they had experienced HIV care in the pretreatment era.DesignQualitative interview study with framework analysis.SettingTwo large HIV adult outpatient clinics in central London.Participants52 HIV-positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (preantiretroviral therapy (ART)), 1997–2005 (complex ARTs), 2006–2012 (simpler ARTs) and 2013 onwards (recent diagnoses).ResultsSome important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side effects from early ART. However, despite improvements in ART and life expectancy over the epidemic, we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone. Fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis. Engaging with care was facilitated by a flexible approach from services/clinicians. Initiating treatment was a major life decision.ConclusionWe found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment, services should continue to recognise the needs of patients for whom the diagnosis and treatment remain significant challenges.

From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

“…We recruited and interviewed 52 people, 25 at one clinic and 27 at the other . Our sample comprised of 37 men who have sex with men (MSM), 4 heterosexual men and 11 women, one of whom was infected through injecting drug use, the rest through sex with men.…”

“…Detailed recruitment and sampling methods are published elsewhere . Briefly, we recruited 52 study participants from September 2014 to April 2015.…”

Experience of primary care for people with HIV: a mixed-method analysis

“…As part of a larger study exploring the experiences of PLHIV across the 40-plus year history of HIV and antiretroviral treatment, 11,12 participants were recruited from two large HIV clinics in London; details of the methods are published elsewhere. 11 Briefly, participants were recruited between September 2014-April 2015 using a sampling frame that identified four 'HIV generations': generation 1 (diagnosed pre-1996, before ART), generation 2 (1997-2005, complex ART), generation 3 (2006-2012, simpler ART), and generation 4 (recently diagnosed, 2013 onwards). Within each generation, people were recruited across a range of characteristics (age, gender, sexual orientation, and ethnicity).…”

“…The topic guide was developed with the broader aim of exploring ongoing experiences of living with HIV and has been described in previous publications from the study. 11,12 Within these interviews, participants were asked specifically about interactions with GPs. GPs were also mentioned in other contexts; for example, when discussing HIV diagnosis or ongoing health management.…”

“…This research aims to fill this gap by: a) reporting prevalence of GP registration, disclosure of HIV status, and satisfaction with GP services by quantitative analysis of a nationally-representative sample of PLHIV; and b) examining personal experiences of PLHIV consulting their GPs, to identify practical steps for improvement from a qualitative research study with PLHIV in London. Previous research from the latter, qualitative study has described PLHIV perspectives of going through the treatment cascade, 11 and how they view the contemporary metanarrative of HIV as a chronic condition. 12 This article focuses specifically on PLHIV's views and experiences of using primary care services.…”